1st March 2003
Real Living with Multiple Sclerosis
A WHILE BACK, I realized that I was overly focused on the caregiving tasks I do for my loved ones. As a result, I was overlooking the very person depending on my care. For a long time, I followed a strict routine to complete my work. When I experienced any interruption in that routine, I would become annoyed, Finally, I had to stop, reevaluate my approach, and take stock of my feelings.
My first step was honest self-examination. I knew I had to be more understanding. So I considered how I would feel if I had MS. How would I feel if I was the one lying in bed with a trapeze bar hanging in my face, knowing that was the only way I could pull myself up in bed?
I would be quite upset if, every time I asked a question, I was told, "You just asked me that." As part of my self-examination, I talked to my support group about the irritation of having to repeat myself frequently. I found I wasn't alone in my frustration.
A Gradual Decline
Pat's husband is 67 years old and has been dealing with memory loss for about 7 years. She works outside the home to help support her family. Her husband is able to handle some of the household chores, such as paying bills, yet he often forgets to deposit their checks or to pay the bills on time. When she comes in from work and asks if anyone called, he may say "No" even though many people have called.
If she asked him to go into another room, find an object, and complete some action with it, he would get lost somewhere along the line. Pat's present solution: Only tell him to do one thing at a time.
Richard says his wife Amy's memory loss didn't happen suddenly, which is true in most cases of MS. Amy's cognitive impairment increased gradually over many years. On occasion, she voices abstract ideas that don't make a lot of sense. Amy used to love to read, but after 20 years of living with MS, she stopped reading because she couldn't remember the beginning of a sentence after she reached the end of it. Now she subscribes to books on tape from her state library. If she forgets what happened earlier in the book, she replays the tape.
James has significant loss of balance and is easily fatigued. Memory loss and difficulty with auditory processing are his greatest challenges. Once his family recognized and accepted the reason for his repeating questions, all of their lives became much easier. When everybody involved adopts patience and a sense of humor, interactions are more successful and less stressful.
Bill's spouse's has no problem with longterm memory. She does have short-term memory loss, however, and uses an extensive array of self-sticking notes and lists. Occasionally, she can't find the word she needs, but after so many years of marriage, Bill can usually fill in for her.
Memory loss can vary from person to person. Cognitive changes in MS include problems with thinking, reasoning, and memory. Some individuals aren't affected at all, but others have variations of all the above at one time or another. Cognitive impairment can be one of the more complicated and difficult symptoms of MS. When it's established that cognitive changes have occurred, caregivers, family, and friends will need to be most understanding.
As caregivers, it's normal to want to protect our loved ones from emotional stress and burdens. By learning to communicate openly and honestly, we can strengthen our relationships. Hiding or denying our feelings may seem easier, but it can actually contribute to the problem. Eventually, one or both parties will feel resentment.
Being a caregiver for someone with MS is an ongoing learning process. One thing I've learned is: Every relationship is different and has to be resolved in its own way, depending on the individuals.
For information on memory loss and other MS-related cognitive impairments,
contact the National Multiple Sclerosis Society at 1-800FIGHTMS.
© 2003 Real Living with Multiple Sclerosis